A mother has spoken of the devastating consequences of a serious spinal condition to help others get diagnosed before it’s too late ahead of Cauda Equina Day on 1 October.

Claire Rawlings, 47, of Darlington, Co Durham, was forced to give up her job as a health visitor, has chronic severe pain and very poor mobility after being struck down by cauda equina syndrome. She is cared for by her husband Ian, who has had to give up his job as a chef to do so, as well as caring for the couple’s daughter Gabrielle, eight.

In addition to relying on crutches indoors and a wheelchair outside, Claire also has significant problems with her bladder and bowel and relies on medical aids to manage this, which has had a further severe effect on her quality of life.

Claire, who also has two adult children, is sharing her story to raise awareness of the ‘red flags’ of cauda equina syndrome (CES) for Cauda Equina Awareness Day, which has been organised by the Cauda Equina Champions Charity, so that other sufferers can be referred for urgent treatment before their condition becomes permanent like hers.

When Claire first developed symptoms, which included severe back pain, an episode of bladder incontinence and loss of feeling around her back passage, a healthcare worker she saw in February 2016 failed to appreciate these were symptoms of cauda equina syndrome and send her straight to A&E for an urgent scan and surgery. If they had, Claire would have been operated on the next day.

The medical professional did make a referral for an MRI scan, which was done in March. This showed that a disc at the base of Claire’s spine was putting pressure on her cauda equina nerves and causing her symptoms. Urgently-needed surgery was delayed by a further two weeks, by which point it was too late to prevent permanent nerve damage from being caused.

Due to Claire’s severe disabilities she will require a high level of care for the rest of her life and it is unlikely that she will ever be able to return to paid employment.

Claire commented: “Cauda equina syndrome has had a devastating impact on my life and can happen to anyone. I’ve lost a career I loved and my family have lost the active and independent mum I used to be. Nothing can turn back the clock for me and all I can do is try to stop others from suffering the same fate.

“I am a volunteer for the Cauda Equina Champions Charity, providing support to other sufferers and it’s shocking the number of people who have gone through what I did. There needs to be more awareness of the red flags so that medical professional appreciate this is an emergency situation and the lives of whole families will be turned upside down if they don’t.”

Claire is being helped to challenge the poor care she faced by Eddie Jones, a specialist cauda equina solicitor at law firm JMW.

Eddie commented: “Claire’s case is extremely tragic but sadly not isolated and at JMW we are contacted on a weekly basis by patients who say they have faced similar delayed treatment and permanent injury. Cauda Equina Syndrome is an extremely distressing condition that pulls the rug from under previously independent people. There is a window of opportunity to treat the condition successfully when the symptoms first strike but too often medical professionals do not recognise the red flag warnings or do not appreciate the urgency. Whole lives are being ruined when in most cases this could be avoided with better care.”

What is cauda equina syndrome?

Cauda equina is the Latin for ‘horse’s tail’ and refers to the bundle nerves at the bottom of the spinal cord which look like a horse’s tail.

The nerves can become compressed due to pressure from a slipped disc, a tumour, trauma from an accident, stenosis or a cyst, causing ‘red flags’, including:

Leg pain/weakness or altered sensation such as pins and needles or electric shock sensation

• Altered bladder function, including not feeling the urge to go, altered sensation when passing urine, or incontinence.
• Bowel incontinence or reduced sensation
• Change in sensation in the groin or saddle area e.g. numbness when wiping or pins and needles
• Altered sexual function

Patients have the best chance of recovery if they receive surgery within 24 hours of the onset of red flags. The longer they are left, the poorer their outcome.

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